struggling with prednisolone and the diagnosis. Not sure Ive got PMR .
Everyone here reports pain but I havent pain, just extreme weariness and weakness. The silliest things are nearly impossible. Someone here mentioned "lead diving suit". Yep! I wear one of those!
Doc put me on 15 mg and morning One I felt so much better. Reduced to 12.5 a month later and by month 3 I asked to go up to 14 mg. Since then zi reduced by half mg every 10 days. At 12.5 i felt as awful as pre-preds and have been told to take 20mg for last 4 days. Felt no better, so GP tells me to reduce to 15 mg right away and " in a few days" down again to 12.5.
It all seems chaotic and I am not sure my GP has seen much PMR. Anyway I still have no pain, just weak and useless, shaky and poor balance.
What else could it be?
Gosh gentian, your Dr really seems to behaving quite cavalier with your treatment plan. I did believe that for a PMR diagnosis there needs to be some pain, because PMR is inflamation of the large muscles and fluid inbetween the joints and it's this inflamation that in turn causes the pain so if you can have PMR minus any pain that's a new one on me.
have you had a blood test at all? Blood tests are not always 100% reliable but if inflamation is showing that helps with diagnosis.
extreme weariness and weakness can be symptoms attributable to many medical conditions. I believe your Dr needs to do an in depth blood test to see if anything shows, and all so perhaps wean you off the preds if they are doing nothing positive for your existing symptoms. I do wish you all the best. Christina
I have been to Huddersfield today, walked miles looking for seaweed to sprinkle on food, no none anywhere, BUT boy am i tired, no pain like you say but i suffer with tiredness if i overdo it, Eileen will be along to tell you we MUST REST as i am now learning. But as a newbie i am sorry to say that is all i can tell you.
Sorry Gentian, when i get up on a morning i do suffer with aches in neck and shoulders, but this does get better after about 2 hrs when i have taken my pred. hope this helps a little
Hi Gentian, If I were you, I would list my symptoms, the things I find disabling (such as housework, shopping, stairs, etc) or even inconvenient (such as tiresome sweating bouts, poor sleep, exhaustion, depression, anxiety, etc). This is because the effects of PMR have been under reported in the medical media and is regarded as a trivial complaint by most doctors, ie (weak and/or aching muscles of unknown cause). However, if you do have PMR, your doctors should be aware that GCA could occur, in which case a proper diagnosis of PMR is worth having.
Gentian
i had months of weakness and extreme fatigue that doctors could not figure out... Suddenly I had severe neck pain and then hips became very painfu, next shoulders...
there's article stating fatigue as a precursor to PMR...
all the best....
I agree with the others who have posted.You need further evaluation.Have you seen a rhuemy? This might be a good idea as it seems there is alot of inconsistancy in your pred doses jumping around in large amounts this makes it very hard for your body to adjust and get the full benefit of the treatment.
Gentian, you said you haven't got any pain but you mention the feeling of being in a "lead diving suit". Does that mean you are feeling very stiff? Some patients with PMR describe their pain as stiffness rather than actual pain. However, at diagnosis it is very common to feel actual pain in the hip girdle and/orshoulder girdle, the arms and down the front of the thighs and in the groin. I assume your GP has carried out numerous blood tests to rule out other things, such as anaemia or a Vitamin deficiency of some sort.
Gentian,
You are all over the place with you dosage, trying to catch up and trying to be done with it.
You need to stay on a dosage and give it a chance to calm the inflammation and then gradually start to decrease your medication.
If what you have is PMR, you need to accept the fact that this is a couple year proposition. It is not go to go away because you want it to go away.
No one wants PMR, but we have it and need to deal with it.
Hope you get your pain under control.
Charlie 44644
Thank you all who replied. It is wonderful to have your support and experience. I am due to see my "rheumo" specialist at the local hospital, again early June, hope he can sort things out as I just dont understand - or trust, really, - whats going on.
The no pain thing is ODD. im lucky I realise. The weakness isnt quite stiffness its just that walking across the room is seriously hard slow staggery work, by the time I'm upstairs I cant lift my hand onto the bannister post at the top. Cant swing a jacket round my shoulders. . oof. . cant lift a saucepan of water, and no energy for anything. V. hard on husband who's doing most of the work, and really doesnt understand why I dont make more of an effort!
Hi Gentian -
I have GCA - your symptoms sound very similar to mine in the beginning - plus a depression. I don't have the typical GCA symptoms- no temporal arterits - and like you fortunately no pain.
But so tired, no appetite, depressed, weak and just generally all wrong - I wanted to sleep all the time and was totally lethargic.
The first day after my initial dose of 60 mg prednisolone - I felt wonderful - my energy levels didn't let me enjoy my feeling of euphoria for long - but just knowing what was wrong - and that it was treatable was a huge relief.
Have you had any blood tests? I agree your experience does sound chaotic!
Good luck chasing down a diagnosis.
Janet - what you describe sounds like me, but I dont know about GCA, what is it?
Yes I had lots of blood tests and should have paid attention and made notes. Next time I will!
I had 2000 - somethings - in the blood, or maybe in the muscle? 200 is normal, Several thousand is possible but severe, so I am middle-ish .
Wd have had a muscle biopsy for myositis, but as I take Warfarin as blood thinner it was decided against .
Like you I was so happy something was diagnosed and prescribed that I felt masses better for a few days, Later improvement seemed to stall. And on preds I feel half a bottle "up", dizzy shaky and rather hyper all the time. Not good!
I hope you are progressing well, very best of luck.
Hello gentian, please do look up GCA. GCA stands for giant cell arterious (spelt wrong). It is a sister condition of PMR although not everyone that gets PMR will go on to develop GCA and vise versa. PMR effects the large muscles and fluid inbetween the joints where as GCA effects the arteries. It is treatable and like PMR is a self limiting condition that can take anywhere from a couple of years to many years to burn out. It is controlled, as there is no cure, with the same drug, prednisolone. It is a far more severe condition hence the very high levels of prednisolone that is initially used to get the inflamation under control, and along with the very high doses, is the more severe side effects of the drug, but as the drug is reduced so do the side effects.
Personally, I do believe that you need to revisit your GP and request that they explain some of the blood results, especially the ones that lead them to diagnose PMR. Then if they are still of the same opinion ask about a more controlled reduction programme, perhaps one that's more in line with the Bristol PMR plan, google that and it will come up, hopefully then you will see a more steady recovery. Otherwise you could ask for a referral, that way hopefully a clinician with more experience may shed some light on how you are feeling right now. All the best, christina
Hi again Gentian
Christina has described what GCA is - (besides being a pain in the butt!!)
it is also known as temporal arteritis - due to the fact that the most normal presentation is in the major blood vessels of the head/ temples - which can cause all sorts of pain and even blindness if not treated.
I found that because I had an atypical presentaton - not affecting the head and with no pain - it had the doctors baffled - they thought I had a cancer lurking somewhere so in the end I was sent for a PET scan - the scan that you have with a "radio active" contrast - this shows up any activity in the body - finally there was the culprit, my aorta and the major blood vessels connected lit up like a christmas tree!
Don't know if my story can help you - there are many factors - first and foremost what your blood tests showed.
Just thought I would let you know that GCA can't be ruled out just because you aren't suffering from pain in your head.
There is a lot of mystification and misinformation which is even confusing doctors. Temporal arteritis is inflammation of the temporal artery. Other arteries can be affected by giant cells, including the carotid and cerebral arteries. Giant cells affect medium and large arteries in the body. Especially serious are the arteries which supply the brain because blindness, deafness, strokes and dementia can be caused if the arteries become damaged. Other arteries in the body, when damaged, can prevent blood supply to vital organs. Janet raises a very important matter, that GCA can be affecting arteries which are not in the area of the head but need treatment all the same. THIS NEEDS FLAGGING UP EVERY TIME. Temporal arteritis is inflammation of one small area! Can you believe that even doctors think that GCA only affects the temple area! How stupid - qnd how dangerous this thinking is!
Dear Janet, there are no 'typical' GCA symptoms because any large or medium artery in the body can be affected and can affect any of the body's organs. It is only when the temporal artery becomes inflamed that doctors become frightened because blindness, deafness and an increased risk of stroke and dementia are often the result of inflammation to this particular small area of artery. I would be interested to know Janet, where your arteris is positioned and how you discovered it!
Agreed - there are no typical symptoms of GCA in real life - in the world of doctors diagnosing GCA there are those of us who apparently don't present with the correct GCA symptoms - I am sure that there are many folk around who have GCA without it being diagnosed due to a lack of the "typical" symptoms.
When I was diagnosed they were looking for cancer and found GCA by accident.
My symptoms started with a depression which wasn't strange as I had recently lost my mum after losing my dad 6 months earlier - both to cancer - my sister was diagnosed with a very aggressive cancer - so I suppose depression was on the cards, this was treated with antidepressants. Then I started with a tickly cough and a sniffle - like a summer cold but it just didn't go away - after a month I went to the doctor as I thought that it was odd that I couldn't get rid of it. I can't remember what we did at this point, but I started getting extremely breathless and very tired, no appetite, weight loss and lethargic. Went to the gp again and she took some blood tests. She phoned me at home and said I was to go into hospital the next day - for tests I thought but I was admitted so they could run different tests, scans etc. finally after about 5 days they found the GCA.
I had the PET scan I mentioned and there it was in all its glory - the aorta and the major vessels connected are affected.
That was a long story!!!!
Well, for those who don't get the PET scan, they can have it without knowing. Doctors are only interested when painaffects the temple artery as this is where they can cut into the inflamed artery and get an inch to look for the Giant Cells and, if found, make their money on transferring patients for drug company trials. Earache, ringing in the ears, pain and tenderness across the scalp, pain in the jaw joints, etc., are not considered of any imporance. I wonder how many more people, if they had a PET scan would find other areas of their body affected. Glad it has been found for you Janet! The prednisolone might save you from having a major operation!
They do NOT "get money for tranferring patients to drug company trials on the basis of a biopsy". Please don't make such statements when they are patently not true. In fact, it would be a good thing if it were true because then it would suggest that new approaches to management of GCA were being looked at.